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Patient voice — colorectal adenocarcinoma

This directory records the patient-experience layer of the colorectal adenocarcinoma knowledge base: how screening, diagnosis, multimodality treatment, altered bowel function, stomas, surveillance, recurrence risk, inherited risk and treatment cost are experienced by patients and families. It complements efficacy evidence rather than substituting for it. A treatment can improve disease control while imposing bowel, sexual, neuropathic, financial or logistical burdens that are not visible in conventional oncology endpoints (Rutherford 2020, PMID 32335745; Pieniowski 2020, PMID 32530135; Azzani 2024, PMID 38182993).

Files in this layer

File Contents
organizations.md Ten colorectal-cancer or cancer-support organizations/networks whose own sites were fetched during this build; services, geography and limits are recorded.
themes.md Thematic synthesis of lived experience. Every promoted theme is supported by at least two independent sources.
sources.md Search method, annotated peer-reviewed sources, fetched organization pages, ethics rules and coverage limits.

The clinical synthesis is in ../../wiki/patient-experience-and-advocacy.md.

Methodology — build session of 2026-08-29

Published research

PubMed was queried live for colorectal cancer combined with qualitative research, lived experience, patient experience, treatment burden, stoma, low anterior resection syndrome, sexual function, neuropathy, financial toxicity, rural and racial disparities, disability access, hereditary risk, cascade testing, young-onset disease, screening barriers, fear of recurrence and watch-and-wait. The layer privileges systematic reviews, qualitative syntheses and studies that expose a distinct decision or service need. Every PMID cited here was returned by PubMed E-utilities during this build session.

Organizations

The search began with large colorectal-cancer organizations and expanded across the United States, United Kingdom, Europe, Canada, Australia, New Zealand, Malaysia and South Africa. An organization entered the verified directory only when its own site was fetched and the described service was visible there. Claims are intentionally limited to what the fetched page supported; absence from the directory does not imply inactivity or low quality.

Synthesis rule

A recurring observation became a theme only when supported by at least two independent sources. Patient-organization service design can corroborate a need—for example, navigation, peer support or nutrition counseling—but does not establish prevalence or treatment effect. Quantitative claims remain anchored in peer-reviewed studies.

Ethics rules

  1. Only public organization pages and published studies were used; no closed groups, private messages or logged-in communities were accessed.
  2. Patient experiences are paraphrased and reported in aggregate. No private individual's name or identifying detail is reproduced.
  3. No cross-source profile of an individual was assembled.
  4. Organization claims are descriptive, not endorsements.
  5. A support service is not presented as evidence that the underlying intervention improves survival or quality of life.
  6. Regional and linguistic gaps are stated rather than filled by inference.

How to update this layer

  • Re-fetch an organization's own site before changing its services or operational status; record the access date.
  • Add a qualitative paper only after a live PubMed verification and add its PMID to the central bibliography.
  • Preserve the two-independent-source rule when promoting new themes.
  • Keep story material aggregate even when an organization publishes named testimonials.
  • Propagate conclusions that alter care priorities to the patient-experience wiki page and record the update in LOG.md.

Scope note

This is a purposive evidence map, not a representative global survey. English-language and high-income-country sources dominate. Experiences of people receiving no treatment, living in conflict settings, lacking digital access, speaking languages other than English, or dying outside specialist services are especially underrepresented. These limits are part of the evidence, not a reason to generalize beyond it.